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Neuropathy Help

jp_young's picture
jp_young
Posts: 7
Joined: Feb 2013

I have stage IIIB colon cancer and started chemo 2 months ago, 4 treatments so far.I am an accomplished artist and was making good money until this all started. Since last treatment on Monday the neuropathy gets worse with each treatment and I am afraid my art career is over. I had neuropathy before the chemo but now it is so bad I can't hold a pencil or paint brush without pain. Doctors don't seem to want to say kiss your art work goodby and just keep beating around the bush. Has anyone one had any improvement after chemo and if so how long before you saw the inprovement? I have packed away all my art supplies and just sit around now doing nothing at all. I am 65 and by myself so just trying to take care of myself is a big job on it's own and my hands have so much pain just picking up a eating utensil is painful so I just don't eat.

 

Looking forward to see what others have experienced with neuropathy and hoping ther is som hope I will someday be able to do my artwork again.

neons356
Posts: 51
Joined: Dec 2010

Depending on what chemo you're taking, radiation effects, and results of surgery almost everyone suffers from neuropathy to some degree. Most of the time, over time, most of it goes away. But there may also be long term effects. Don't put those brushes away yet. Give your body the time it needs to heal and recover from the h*ll it's been going through. I know you want all this to be over and done with and to be back to your "normal" again, but you just have to try and be patient.

                                                                                Carl

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

My suggestion is to try Alpha Lipoic Acid, inexpensive at Walmart. This was a suggestion many years ago on this forum. It does work for some people. My hubby uses it for diabetic neuropathy. He has yet to commence chemo, and I assume it will continue to work for chemo induced neuropathy. As with anything new you introduce to your system, please check with your doctor for approval.

Luv,

Wolfen

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

My onc suggested Lyrica for neuropathy but I was allergic so can't say it worked.  You might ask your oncabout a compound cream made to give temporary relief to neophathy. Pray you can continue your art work.  Jeff

annalexandria's picture
annalexandria
Posts: 2202
Joined: Oct 2011

I'm sorry you're having to deal with such bad neuropathy.  Have you tried glutamine powder?  At the oncology center where I was treated, it was standard tx for all patients while doing chemo.  I think they had us taking 10 mg 3x per day.  You can buy it at vitamin stores.  It's a flavorless powder that you can mix into juice or other liquids.  Only drawback is that it's kind of sludgy.  As for as how long these symptoms may last,  it seems that everyone is different, but my doctor did say that most people will see all the improvement they are going to get by two years after treatment ends, so it can be a long, slow process to fully heal.  And in my experience, most people do see at least some improvement after chemo is over, anywhere from a little better to completely better.  Oh, and one other thing...my doc did say that if it got to the point where the neuropathy became non-stop, and didn't get better toward the end of each treatment cycle (say the last week or so), that he would want to remove the oxylaplatin, or reduce it dramatically, for the last few cycles.  According to him, that drug adds about 5% to one's prognosis, so if you don't take it the whole time, it may not make too much of a difference in the long run.  Good luck, and keep us posted!  Ann Alexandria

marbleotis's picture
marbleotis
Posts: 485
Joined: Mar 2012

I am also 3b, signet cell.  Had 12 rounds of Oxlia, 5fu.  Neuropathy started around #4 and got worse, remember chemo is cumulative.  Onc added mag drip before/after infusions.  By the 12th I had neuropathy in hands, feet, lips, tongue and teeth. Since I love to sew and needed my hands for work (computers), I was very concerned. 

I was done with chemo in August and so far my teeth and lips are better.  Hands and feet still are numb and tingle, but I still do things.  I think the more exercise I give them the better they will get.  My Onc thought that was a great idea.

There is no right/wrong answer, everyone is different.  Sorry.  Just keep doing your art.  Do not let cancer take that away.  I even put in a new sewing studio in my house.  It may take me 10 minutes to thread my machines, but I do not care.  It makes me happy.

 

Totally understand the not eating.  I lost 65 pounds through this. 

jp_young's picture
jp_young
Posts: 7
Joined: Feb 2013

Thank you for all the replys. I can't continue with my art work if I can't even hold a brush or pencil. My art is very detailed and my speialty is animals and it takes a very steady and fine tuned hand to do the kind of work I do. My hands have become very weak also, hard to even type because y hands are so weak and becoe very tired fast. I have to stop aftr every few words just to keep typing, I use my tablet most of the time because I only have to touch the leters on it but I make way to many mistakes even with that

My feet are also very painful and so bad I am now using a cane and have to use a mobility scooter in the stores where they have them to get around. I have my own scooter but can no longer get it out of the van by myself. I bought it before the cancer because of the neuropathy I alredy had and was finally gettig toa point I could deal with what I had. My original neuropathy is from untreated Celiac disease which is also a contributing factor to the cancer, it runs n my family. Sorry for all the typng mistakes but it is the best I can do.

This is just one of my paintings.

Pastel

Chelsea71
Posts: 1170
Joined: Sep 2012

Beautiful painting. You're very talented. This is a good example of how much this disease robs people. You may very well go on to live to a ripe old age once you've finished your chemo treatments. Hopefully this will be the case. But I would say there is a chance you will be forced to give up your livelihood. Hate to be negative and perhaps I should mind my own business. People on this site have struggled with neuropathy for years after chemo has stopped. Hope this will not be the case with you. Hope things improve.

Chelsea

Trubrit's picture
Trubrit
Posts: 1419
Joined: Jan 2013

Never ever, ever, ever give up on something that brings you so much joy, and joy to others. The road may be long and hard, but even if it means picking up the brush and dropping it, pick it up. Paint what you can; they may not be masterpieces, maybe trash, but paint until you drop the brush, even if its just for a few minutes. 

Don't get despondent when people tell you it could last a life time. File that knowledge away, but think that your neauropathy will be the one that goes away completely. 

Sometimes a positive mental attitude is hard to come by when you're in the midst of the treatments, but it will pay off in the long run. 

Your picture is truly beautiful. 

Lovekitties's picture
Lovekitties
Posts: 2934
Joined: Jan 2010

You have a great talent.  So don't throw down the brush just yet.  Perhaps while the neuropathy is at its worst you could change your focus to painting something which does not require so much detail.  Even if you have to go to abstracts, I feel that your talent will still shine through.

If you don't like what you produce, perhaps you could donate them to a cancer fund raiser or a shelter.  I am sure that either would appreciate the eye you have for color and perspective.

Some times we just have to look at something and keep turning it around until it is something we can do!

Hugs,

Marie who loves kitties

jp_young's picture
jp_young
Posts: 7
Joined: Feb 2013

I saw my onco today and showed him some of my work. He was very impressed and asked if they could display some of my work in the office.

After talking tohim and knowing I was at the point where I could barely walk and they had to help me to the exam room he said I was at a level 3 for neurotoxcitity and they had to stop givng me the Oxaliplatin now before I progressed to the higest level 4 where I would not recover from. It has been the worst pain I have ever experienced and even just turning a page in a magazine felt like I was getting a paper cut each time. He put me on gagapentin and said it could take 2 weeks to see inprvement or 12 months but hopefully they stopped it in time.

I started taking the gabapentin and after the second dose I have less pain and feeling much better. He said to give it two weeks before I tried doing any detailed art work so I would not get discouraged right now and just rest and relax knowing I will not have to keep getting the oxaliplatin and things would get better. I feel so relieved now that there is hope. I had to learn all new skills when the neuropathy originally started with the Celiac disease and I'm sure I will ddo some more learning before I am back to full time.

Thank you for all the responses and I do plan on beating this. Your encouragement gives me lots of hope. I have a dog who had brain trauma a year ago and thought I would have to put her down but I supported her and let her fight her way back and if she can do it I can too.

jp_young's picture
jp_young
Posts: 7
Joined: Feb 2013

I saw my onco today and showed him some of my work. He was very impressed and asked if they could display some of my work in the office.

After talking to him and knowing I was at the point where I could barely walk and they had to help me to the exam room he said I was at a level 3 for neurotoxcitity and they had to stop giving me the Oxaliplatin now before I progressed to the higest level 4 where I would not recover from. It has been the worst pain I have ever experienced and even just turning a page in a magazine felt like I was getting a paper cut each time. He put me on gabapentin and said it could take 2 weeks to see inprovement or 12 months but hopefully they stopped it in time.

I started taking the gabapentin and after the second dose I have less pain and feeling much better. He said to give it two weeks before I tried doing any detailed art work so I would not get discouraged right now and just rest and relax knowing I will not have to keep getting the oxaliplatin and things would get better. I feel so relieved now that there is hope. I had to learn all new skills when the neuropathy originally started with the Celiac disease and I'm sure I will do some more learning before I am back to full time.

Thank you for all the responses and I do plan on beating this. Your encouragement gives me lots of hope. I have a dog who had brain trauma a year ago and thought I would have to put her down but I supported her and let her fight her way back and if she can do it I can too.

jen2012
Posts: 1195
Joined: Aug 2012

Beautiful work!

My husband just had treatment #11. Around #6 the neuropathy started bothering him. Doc recommended vit b complex and also started calcium and magnesium during infusions. He didnt feel it was helping and just adding time to a long treatment so they stopped after 3 or 4 times. Last week when we got to the treatment we were told his blood work had an issue...phosporus too high? Maybe potassium? Cant remember but they gave him a bag of fluids before .... and he says he hasnt been feeling as tired or the neuropathy as much. He has been having a tough time getting enough fluids and does feel better when he drinks more. Thinking of asking for another bag of fluids before the next treatment!

Sundanceh's picture
Sundanceh
Posts: 4283
Joined: Jun 2009

Very nice painting!

The odds of neuropathy becoming more permament increase after about the 8th dose...it's sort of like playing Russian Roulette, you just never know which dose could turn the situation permanent.  I was only able to complete 8tx of the Oxy.

Mostly, I recovered....some issues in the feet, sometimes in the hands and fingers, but not the point I'm debilitated.

After treatment ends, give yourself 12-MONTHS right off the top...don't expect great results, but hope for them...and over that time, the neuropathy might lessen to a degree that is more workable for you.

Some folks have it severe...some have done well with it...and there are a host of us all in the middle.

I would imagine that if your career were derailed, that you would still be able to find some enjoyment in your painting...though the focus might change...but you don't know that the change might be in ways than you can't even see right now.  A door might open that you could never envision...it just may be that your new painting takes you down a completely new path...perhaps towards inspiring others through your story.

I'm reminded of an old MASH episode...

In the episode, there was a soldier who played classic concerto masterpieces on his piano...he was subsequently injured during battle and lost the use of one of his hands...he lamented to Dr. Winchester that he was longer viable and that his professional career was over....and now he felt completely useless. 

So, Dr. Winchester did some research and found that the piano could be played with only one hand...(he would now have to play completely left-handed). 

He gathered musical pieces that could be played left-handed and brought them to the soldier...of course, the soldier resisted and threw up obstacles...but Dr. Winchester persevered and asked him to play a number.

And as he slowly sat back down to "His Canvas" he fumbled through the notes and gradually began playing music once again.  Dr. Winchester told him that he still had value playing...but more importantly now...IN TEACHING.  In the fact that he had an incredible amount of talent and could now turn that energy towards other in helping them.

And by helping them...he helped himself. 

There is no telling which doors you could open...just let it come to you in its own time...

"For with everything...there is a season."

Wishing you the best and thank you so much for sharing one of your paintings...it really is quite lovely.

-Craig

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